Tag Archives: dying

Falling Apart and Holding Together

It’s two weeks almost since Mum died, a week before Christmas Day – since the light of her dazzling smile was last seen. We have cried so many tears our jaws ache and our eyes sting  – it feels as though it helps to cry – you think you’ve finished – then off you go again, triggered at the sight of a flower or a compassionate voice. This morning it was the Magnolia that did it. She bought it for my 60th birthday, insisting we got it months before the date, as they were in season then. It was a small shrub and she helped me choose it at the Garden Centre we often visited together. As I carried food waste to the compost heap earlier, there it was, singing to me with a profusion of tight buds covering it. It will give me a riot of flowers in the Spring – and she won’t be here to see them. Will they comfort me then?

Death is horrible. It rips those who watch it apart – it drains them. Forget all that ‘wasn’t it wonderful that she was surrounded by her loved ones’ business – it’s actually bollocks (‘scuse the language). No matter who is there, it’s unpleasant, heart-breaking and downright mean. It’s an affront. An assault. Death grabbed my mother, took her away from us when we need her here. Well, that’s how I feel right now. I’m not in the mood to be pacified or calmed by the comforting words, that I’ve used with other people and no doubt will use again, despite this. Right now, at this minute, I want to howl from the rooftops that I want my mum. I want her back with us. And if she could just be back for a little longer, I promise I will never be irritated when she asks me to rub her legs for the twentieth time at 3am; I won’t grit my teeth as she turns down yet another lovingly prepared meal; or argues with me that her bible needs to go there, no not there, but just there! I won’t sigh with exasperation when she demands I phone the optician to return to check her glasses, even though I know fine well she isn’t going to pick that book up and read. I will be patient. I will be kind. I promise.

Let me tell you of her dying. We had watched her becoming frailer after her diagnosis of Cholangiocarcinoma at the end of October. I write about this in Companions at Journey’s end. I said more in Reason to be about how this has become our identity – daughters of a dying mum. And we thought we were prepared. We expected it. The only unknown was the ‘when’. And the best thing, in the middle of this horror, was that we had such good professional support. Particularly, a caring and compassionate GP. Mum would not need to suffer in pain at the end of her life. Well, once again, I have to say, that was ‘bollocks’ and I’m not asking to be excused this time.

Mum spent much of her last day in this life in terrible pain. It was horrible to watch. She died on the Monday and on the Friday before, she had become so much more unsteady and my sister and I realised we would have to make a decision very soon about insisting she was nursed in bed – it was becoming unsafe for her to try to walk to the commode any more. By Sunday afternoon, the decision was taken out of our hands as her leg gave way when my sister was helping her to bed. Thankfully our daughters live close by and were able to help lift her to bed using a blanket. She was not distressed, but obviously very weary. By now she was hardly eating at all. Sips of soup, teaspoons of custard – but little else. She’d stopped reading; she wanted to talk less and less. Our plan, made over the phone that night, was to increase the carers to four times a day; ask GP to call to review; the district nurses would come in the morning anyway. The bedroom furniture was further rearranged and the bed pulled away from the wall to make nursing easier.

Events quickly overtook us. At 5 in the morning, my sister called an ambulance as she was struggling to clear her secretions. We’d been advised that the paramedics would be able to make her more comfortable, even though she would not want to go to hospital. Wrong! They were almost insistent that she go into hospital. My sister was made to feel as though she was obstructing treatment. After an hour of wrangling with them, all the time my mum telling them she did not want to go, a call was made to the on-call GP (what a useless system that is, for someone dying!!) who did an ‘over-the-phone’ assessment and agreed that staying at home was in  her best interests. Oxygen had rallied mum and she was a little brighter. The doctor told us he would leave a message with her own GP for an  urgent visit.

After half and hour, mum was clearly in pain, had become very weak and was distressed. I set off to drive across the Pennines to be with them all. My niece, daughter and sister were all round her bed, upset and anxious when I got there. Mum was dying – it was obvious now. there would be no coming back from this. He breathing was laboured; she was wracked with pain. She was SUFFERING. Lou had phoned the GP to be told by a receptionist that the doctor would come after surgery – at lunchtime! In the meantime, we had to watch our mum crying weakly in agony. I held her hand and sang the 23rd psalm to her – the Stuart Townend version, her favourite. As I sang the words “I will trust in you alone”, it sank in that no one else can be trusted. We had been assured that this very event would not be allowed to occur and yet here she was in the most awful pain – and there we were helplessly watching and trying to comfort her.

We tried MacMillan; the district nurses – all were concerned but no one could help. We had to have a doctor to prescribe the drugs she needed. Why had they not already been prescribed? Good question! And one we are pursuing in complaint to the GP.  To cut the whole story short for now though – a GP finally arrived shortly after 2pm, prescribed the drugs, was followed back to the pharmacy by the district nurses who were back within half an hour and administered them promptly. Within minutes Mum was calm and mercifully free from pain. At peace.

My sisters, brother and I left her with the grandchildren and went with the district nurse to discuss what would happen over the next 24 hours or so. We left the nurse then, in the privacy of another bedroom to write up her notes. I’d hoped to take my youngest daughter home to feed her children – it’s 4pm now-  but was called back by my brother. He was sitting holding her hand; my sister on the other side of the bed with the youngest great-grandson in her arms, a month-old baby. With no further words, Mum let go of Paul’s hand and of life and with that she was gone from us.

Then we howled. Then we sobbed. Then we clung to each other. Horrid, horrid, horrid. Ripped apart by her exit. She brought us to this world and has left us not to cope without her. Even to the end, she did it stubbornly. That’s not the way, Mum. We were all meant to be there! You were meant to wait till after Christmas Day. It was all meant to be beautiful – not this bloody mess and wrangling with doctors and watching you suffer and feeling traumatised. You did it all wrong! Come back – can’t we try again? Do it better this time?

I ache with it all. I hate that she is not her at the end of line to speak to. That she won’t phone me and berate me about something I’d said I’d do and hadn’t got around to. That she isn’t there to make selfish demands on my time or my sisters’. That I will never see that smile again. Hear her laugh. Tell me that story – again – and again. And be there when my heart is breaking. Hold me and hug me when I need the warmth that only mums are able to give. I want her so bad and it hurts so much.

My mum and I shared a faith in God and the life to come. Of course, I know where she is and that she is free, restored and with God. Well, I think I know that. Today, my faith has been battered. I am  hoping it will hold me; my fingertips are barely holding on to it – but I am angry and in pain and it feels as if my grip could slip. What will hold me then? Where can I find peace? It evades me for now. God – we need to have words. I feel so very badly let down. She was such a good servant, Lord. Why did she suffer as she did? Take her, if you must, but not like that.

In our pain we cling to each other – my sisters, brother, daughters, nieces and nephews. We know that only we fully grasp how painful this is for each of us. Our hugs are plentiful. We talk into the early hours with each other. We text, message, share photographs. She was always at the centre of things, our mum, our grandmother – she laid a great foundation; as she has gone, so we come together and rotate around her absence, pulled closer to each other in our loss.

Reason To Be

It is six weeks almost (really? Only that long?!), since we found out that Mum’s time in this world was drawing to an end. I wrote about those very first days in Companions at Journey’s end. It helps – to write about it and to talk about it.  It’s easy to feel isolated – alone in all of this. We read on a website (I had typed “what to do when someone is dying” into a browser – because I really, really want to know what to do) that feeling as if you exist in some sort of bubble, as if life is now passing you by, as if you may not be able to concentrate on anything else, as if this, this waiting for death, is all that matters – all of that is normal. The relief we all felt was wonderful. We are so afraid of getting it wrong, Of making mistakes that will somehow ‘spoil’ what is left of our mum’s life.

Some of our questions are obvious, but seem frightening to vocalize. “Who do we ring first if she dies at night?”; “What happens to her body after she dies?”; “How do we arrange a funeral?” We hesitate about asking these questions out loud at first. And how much do we talk to mum about these things? Sometimes she seems clear and keen to discuss things life her personal effects and her funeral; her financial affairs and contacting people to say goodbye to. Other times, it is as though she is in denial about everything. She can hardly walk to the commode in the bedroom, yet demands that a stair lift be fitted so can come downstairs. She feels she is going stir-crazy in her bedroom. We doubt she will actually use it. Most of the day she is simply too exhausted to do anything. Having a drink wipes her out. Yet when someone visits, she rallies, drawing strength from some reserve deep within herself. She is delighted particularly when the little ones come – Oscar, Isabella, Jessica. She loves to watch them hunt in her drawers for the chocolate she has always hidden especially for them. She’s always loved babies and toddlers and they have always responded well to her. Last week, my sister and daughter felt the tears pressing on their eyes as they watched her press a coin into the hand of Cooper, the latest addition. A tradition she has upheld with every baby who is put in her arms.

She doesn’t rally much for us now. We have to accept that exhaustion is normal; fighting spirit is rare. She can’t sleep through the night; her legs and feet throb. She can’t lie down; he lungs feel as if they are being swamped with thick fluid. She feels totally listless and her interest in anything is diminishing daily. Sleep is her best friend, but eludes her too much to refresh her sufficiently.

Professionals are being marvellous. The community nurses bring dressings, pressure relief aids and their competency, which we grasp at. She gives them a hard time, refusing their offers of painkillers (fear of constipation!) and raised foot-stools (makes her legs hurt more). They try but they cannot please her. Carers are wonderful, giving us some respite and bringing another kind face into the mix. Allowing our inter-reactions with her to not always be about bodily functions. Allowing us to take a walk or go to the shop. They even wash pots and empty bins as they brightly chatter. We are becoming very fond of them.

The GP patiently explains what to expect; holds our hands as she tells us how to report the death when it happens; talks with us of practical things and puts her arms around us when we weep. Her compassion makes us cry more, but reassures us we are not alone and that we are cared about. All the time we know we are ‘in-waiting’, that this may last days, weeks, possibly months – the time is the one thing unknown.

As I walked to the shops a few days ago, with a list of things she wanted – prunes, jellies, tissues – and instructions to pay the papers out of  “that money, not the money you draw out” – I remember thinking that this was now my ‘reason-to-be’. Not that I was a vocational shopper, but that being ‘daughter-to-my-dying-mum’ was my reason right now. It has taken centre stage in my life, as it has in my sisters’. It is what we do right now, as I described before, we are ‘companions-at-journey’s-end’. Other things happen and life goes on; other people call on our time; jobs need to be done, but “this” is the “thing” that occupies most of our waking hours, interrupts our sleep, takes up much of thinking space and prevents us from making too many long-term plans. This is just how it is. And worse, if we feel even the slightest resentment about any of that, we hear an inner voice chastising us for being mean. Sharing with each other though, we have come to understand the normality of our thoughts and our questions.  We are not mean; just human and we’re feeling our way along a tricky path.

There is something of purpose in it; this ‘reason-to-be’. We are needed, we are treasured, we are occupied purposefully and mostly, there is nowhere else we want to be. This consuming of all of our time is what we give up willingly. It has focused us on how precious life is and how much we should revel in it. How it is only in relationships with each other that we truly come alive. We give and receive from one another and become more human in the exchange.

So, as I watch Isabella and Jessica rise up and down on the electric bed, laughing joyously and see mum smiling on at them, I remember my Gran and the huge love she had. That smile replicated on my mother’s face; that delight felt in my own heart; that beauty seen in my daughter watching them too and that laughter lighting up the room from my granddaughters. And I love that each of us pass something of ourselves, down through the generations, as we pass through this life, that will live on and light up other lives once we have passed on. More of what gives us reason to be.

 

Companions at Journey’s End

A few weeks ago my Mum turned yellow – seriously yellow! She actually  looked as if she was auditioning for the Simpsons.

“Mum, you’re yellow,” I told her, trying hard not to sound too alarmed. “Oh I know, your sister keeps saying that. I can’t see it myself and I don’t feel ill.”

We persuaded her eventually- not easily – to go to the GP.  I dreaded what my sister would tell me when she ‘phoned me that night. I could be wrong, I thought. Surely a damaged heart valve is enough to be living with at 88? She couldn’t possibly have any liver damage, could she? It might be some kind of weird Hepatitis that they could deal with quickly.

I was kidding myself. I knew there were no other explanations. Urgent scan booked, two days later, on a Friday, she reluctantly (because she had a whole diary of commitments that day!) climbed into my sister’s car and they made the journey to Stepping Hill hospital. My sister drove home alone. Mum was too dehydrated for a scan; they admitted her and set up an IV drip to pump fluids into her.  She was irritated by the whole inconvenience. There were flowers to sort for church; linens to wash for Communion; hyacinths to be lifted out of dark places.

The CT scan was booked for the following Monday. Luckily, I could be there. I didn’t want to be there. Well, I was happy to be with her, but I knew, with a sickening ache in my stomach what it would reveal. I arrived at 11am and at midday she was wheeled down to Radiography and I walked alongside her. I’d be doing a lot of that in the coming days. Walking by my mum.

She wasn’t happy about the scan. “It’s the noise I’m worried about.”

“Good job you’re deaf then!” I joked. I expected her to be frightened as we waited; she was more bothered about wetting herself, being saturated with fluids and with bursting bladder. I watched through the open door as a Radiographer patiently explained what would happen. She had a professional, calm air about her that probably reassured Mum, but which brought home to me that I was now on ‘the other side’.

I was in the NHS for over 30 years; a nurse for most of that time, I also spent many years working with parents and families. I was the one doing the reassuring; patiently explaining; demonstrating compassion. Now I watched as Mum embraced the patient role; lay on a trolley and was fed through a ‘Polo-mint’, as they termed it for her amusement. I did not enjoy being a patient’s relative; I felt powerless and uncomfortable. I wanted to be ‘in-the-know’ and doing the reassuring.

Then began the waiting game. We would have the results by 7pm and my sister would be with me then. Our other 2 sisters and brother waiting in their homes for news. My eldest daughter and niece arrived at 6pm. Sammy, the eldest daughter, is good to have around on these occasions. She’s funny and loud; she helped us to forget that we were waiting for terrible news; news that wouldn’t be new; that would actually confirm what we actually already knew, but perhaps couldn’t accurately name.

He was a young man; no more than 30 – younger than my youngest. Dressed in green scrubs (so glad for those; they made him into someone who surely knew what he was talking about), he came and sat on her bed, next to me, opposite my sister and close to Mum, so that we would all hear him as he spoke. Ali and I held our breath. Mum looked totally relaxed and gave him a dazzling smile (she is so good at dazzling smiles!) as he began to explain what was going on inside her.

“There’s no real good news to share, I’m afraid. It seems there’s some mischief afoot in your tummy.” It was a good way to start. Mum grasped it, I could tell, but kept on smiling. “It looks to be a sizable tumour and we’re pretty sure it’s cancerous. It’s choking off your bile ducts and messing up the area round your gall bladder and pancreas.” A lot of Mischief afoot then.

He quietly answered our questions. He drew pictures to show what was going on. Worst of all, in his gentlest tone, he explained that there was nothing that could be done. The tumour was nasty, was large, would not respond to chemotherapy and could not be surgically removed. That’s when your blood runs a little bit icy cold; when you hear there’s no hope. That what lies ahead is painful and miserable. But they could make her more comfortable

“Are you saying there is only palliative care is all that can be offered?” He wanted to give us more than that. “We’re not quite there yet. We’re going to look at inserting stents into the ducts so that we can drain off the bilirubin – that’s what’s making her yellow.”

“Are you in any pain at the moment?” he asked Mum.

“Only in my legs. It’s all this fluid you’re putting in me.” Professionals want us to be grateful that they’re trying to help, but my Mum saw this intervention as nothing but a nuisance.

“I’m sorry it’s all bad news” he says. He sounds embarrassed; as though he feels he’s failed her. Ali and I are fighting back tears and Mum just says, “Well, what will be, will be.” He leaves us and we all sit there stunned for a minute. Mum is the first to spring into life. We are given a list of people who need to know – and later there’ll be a list of jobs that need to be done. She has a focus now; she knows ‘what’s what’ and somehow, despite the awfulness of the diagnosis, she is galvanized into action.  It is she who comforts us by giving us tasks to fill our time. Presents have to be bought; messages have to be conveyed.

And so we enter a period of madness; of conversations where people are shocked and saddened. Of busy-ness; where we work through the lists we have been given. Of questions and uncertainty; where  we struggle to find the right professional to give us accurate information. One day things seems clear – the next it appears no-one seems to know what’s going on. We hear nothing; there is nothing to tell us then suddenly she is whisked off to Wythenshawe at the crack of dawn for stents to be inserted. One day it is essential she has IV fluids; the next, when she tells them she won’t have her other arm made a mess of (her right one had a clot and became severely bruised and very sore) it apparently is no longer important. Then she has an infection, but it’s okay, she won’t need to be in a side-room as ‘it won’t be good for her mood’; the same evening, she goes to the loo and finds her bed and belongings moved to a side-room. We are exhausted with driving to this hospital, finding parking places, and with trying to find out facts about our own mother.

Most of the nurses are wonderful; some are not. There is the night nurse who refuses to let her get into bed at the side she finds easiest. Who tells her off (telling an 88-yr-old lady off! What?!) for needing to have her legs lifted into bed. ‘How do you manage at home? That’s not what we’re here for’. I wish I had met this nurse. I would have lifted her legs for her!

Then there is the day we can’t take any more. Mum is becoming depressed. She hates that she has to use a walking frame; that she needs a pressure cushion; that she cannot manage all her toilet needs and finds it difficult to wash. An alpha-female, used to being in control, she has been independent all her life. Now, daily, all that is being taken from her. She wants to be at home. And we’re told she perhaps as no more than a few months left with us. Her bilirubin levels are still staggeringly high. Her legs are swollen so much her joints can scarcely bend. She can’t sleep and she hates the food.

We decide to demand answers. What is the point of her being here if nothing more can be done? I ask, in my best voice, ready to stand up to professional defensiveness, if we can talk to someone about our mother’s care because we’re concerned. We are ready for battle but are instead disarmed by kindness and compassion from a Nurse Practitioner. I love this nurse. Plans are put into place with great haste and the very next day she is discharged into my sister Ali’s care (she lives with her).

What happens after discharge is another story – one I may tell another day. But a commode is installed; a special bed is delivered; carers are appointed; rotas for us are established; stair-lifts are installed; a funeral is talking of; application for lasting attorney is registered; the house and our lives are turned upside down. All this and more – as we all prepare to accompany our Mum on the last leg of her journey. As we make ourselves ready to let her go. As we watch her shrink, become frailer and wait for the inevitable pain to hit her in waves.

We have shed so many tears, but we’ve had to dry them for now as there is much to do. We have so little time with her, we can’t be wasting those precious moments sobbing. In the coming weeks, we are told, she will become less able and more bedridden as her muscles waste and the cancer invades other parts of her body (it has already found its way to some glands and into her right lung). Her heart is already compromised with Atrial Fibrillation and is working very hard to fight this invader; but it won’t win, we know that.

Mum has a deep faith.  She is not afraid of Death for she knows it was defeated on the Cross. She is, however, wary of dying. She knows it has to be done but she wishes it could be missed out and that she could just go straight to the Father.

And she does not want to leave us. We can’t bear the thought of her not being here. I think now, as I write this, that months from now, I will read this and she won’t be here. I won’t see her again in this world. I carry around the weight of the sadness of that with me always.

But tonight I have laid down the sadness for a little while. I have girded something within myself; something of her that birthed me and made me strong enough to face a tough world with a smile on my face. And I give thanks that I have the honour of being one of her companions as she makes this last stage of her journey. And I pray for strength to carry her, along with my sisters and brother, on that day when she can no longer carry herself. And for the fortitude to be able to let her go when the time comes.